Phase 2 Randomised Controlled Trial and Feasibility Study of Future Care Planning in Patients with Advanced Heart Disease.

Future Care Planning (FCP) rarely occurs in patients with heart disease until close to death by which time the potential benefits are lost. We assessed the feasibility, acceptability and tested a design of a randomised trial evaluating the impact of FCP in patients and carers. 50 patients hospitalised with acute heart failure or acute coronary syndrome and with predicted 12 month mortality risk of >20% were randomly allocated to FCP or usual care for 12 weeks upon discharge and then crossed-over for the next 12 weeks. Quality of life, symptoms and anxiety/distress were assessed by questionnaire. Hospitalisation and mortality events were documented for 6 months post-discharge. FCP increased implementation and documentation of key decisions linked to end-of-life care. FCP did not increase anxiety/distress (Kessler score -E 16.7 (7.0) vs D 16.8 (7.3), p = 0.94). Quality of life was unchanged (EQ5D: E 0.54(0.29) vs D 0.56(0.24), p = 0.86) while unadjusted hospitalised nights was lower (E 8.6 (15.3) vs D 11.8 (17.1), p = 0.01). Qualitative interviews indicated that FCP was highly valued by patients, carers and family physicians. FCP is feasible in a randomised clinical trial in patients with acute high risk cardiac conditions. A Phase 3 trial is needed urgently.

Piloting a new approach in primary care to identify, assess and support carers of people with terminal illnesses: a feasibility study.

BACKGROUND: General practices in the United Kingdom are encouraged to have a protocol for the identification of carers and a mechanism for social care referral. However, a minority of carers are identified and those caring for someone with a terminal illness often cope until the situation becomes overwhelming. Earlier identification could enable more timely support. The aim of this project was to model and pilot a systematic approach to identify, assess and support carers of people with supportive and palliative care needs in primary care. METHOD: The intervention was modelled on the Medical Research Council complex intervention framework with a preliminary theoretical phase, which has been reported elsewhere. In this study, which lasted 12 months, four general practices were recruited. Each practice identified a 'carer liaison' person to take the lead in identifying carers, followed by assessment and support using a toolkit modelled from the earlier phase. Qualitative evaluation interviews were conducted with carers who had received the intervention and the carer liaisons and general practitioners in the pilot practices. A stakeholder event was held to disseminate and deliberate the findings. RESULTS: The practices' populations ranged from 5840 to 10832 patients and across the four practices, 83 carers were identified. Thirty six carers were identified from practice registers (disease - 16; palliative care - 9; carer - 11; advanced care plan - 12), whilst 28 were identified opportunistically by practice staff at appointments or at home. Seven carers self-identified. Overall, 81 carers received the carer pack and 25 returned the Carer Support Needs Assessment Tool (CSNAT) form. Eleven carers received a follow up call from the practice to discuss support and 12 were also referred/signposted for support. Qualitative interviews suggest carers valued connection with their practices but the paperwork in the toolkit was onerous. CONCLUSION: This approach to identifying and supporting carers was acceptable, but success was dependent on engagement within the whole practice. Carers did not tend to self-identify, nor ask for help. Practices need to proactively identify carers using existing opportunities, resources and computer systems, and also adopt a public health approach to raise carer awareness and perceived support within their communities.

Future Care Planning for patients approaching end-of-life with advanced heart disease: an interview study with patients, carers and healthcare professionals exploring the content, rationale and design of a randomised clinical trial.

OBJECTIVE: To explore the optimal content and design of a clinical trial of an end-of-life intervention for advanced heart disease with patients, carers and healthcare professionals. DESIGN: Qualitative interview and focus group study. SETTING: Community and hospital-based focus groups and interviews. PARTICIPANTS: Stable community-dwelling patients, informal carers (PC, n=15) and primary and secondary care based healthcare professionals (HCP, n=11). RESULTS: PC highlighted fragmentation of services and difficulty in accessing specialist care as key barriers to good care. They felt that time for discussion with HCP was inadequate within current National Health Service (NHS) healthcare systems. HCP highlighted uncertainty of prognosis, explaining mortality risk to patients and switching from curative to palliative approaches as key challenges. Patient selection, nature of the intervention and relevance of trial outcomes were identified by HCP as key challenges in the design of a clinical trial. CONCLUSIONS: PC and HCP expressed a number of concerns relevant to the nature and content of an end-of-life intervention for patients with advanced heart disease. The findings of this study are being used to support a phase II randomised clinical trial of Future Care Planning in advanced heart disease.

Development and evaluation of the Supportive and Palliative Care Indicators Tool (SPICT): a mixed-methods study.

OBJECTIVE: To refine and evaluate a practical, clinical tool to help multidisciplinary teams in the UK and internationally, to identify patients at risk of deteriorating and dying in all care settings. METHODS: We used a participatory research approach to refine the 2010 Supportive and Palliative Care Indicators Tool (SPICT) and evaluate its use in clinical practice. We conducted an ongoing peer review process for 18 months via an open access webpage, and engaged over 30 clinicians from the UK and internationally in developing an effective tool. Secondly, we carried out a prospective case-finding study in an acute hospital in SE Scotland. Four multidisciplinary teams identified 130 patients with advanced kidney, liver, cardiac or lung disease following an unplanned hospital admission. RESULTS: The SPICT was refined and updated to consist of readily identifiable, general indicators relevant to patients with any advanced illness, and disease-specific indicators for common advanced conditions. Hospital clinicians used the SPICT to identify patients at risk of deteriorating and dying. Patients who died had significantly more unplanned admissions, persistent symptoms and increased care needs. By 12 months, 62 (48%) of the identified patients had died. 69% of them died in hospital, having spent 22% of their last 6 months there. CONCLUSIONS: The SPICT can support clinical judgment by multidisciplinary teams when identifying patients at risk of deteriorating and dying. It helped identify patients with multiple unmet needs who would benefit from earlier, holistic needs assessment, a review of care goals, and anticipatory care planning.

Smoking spaces and practices in pubs, bars and clubs: young adults and the English smokefree legislation.

Young adulthood is an important but overlooked period in the development of smoking behaviour. We know little about the impact of smokefree policies on this group. In a secondary analysis of longitudinal, qualitative interview data we explore smoking practices in young adulthood, the role of smoking in the spaces of the night-time economy, and the impact of smokefree legislation. Participants carefully managed their smoking in different spaces in relation to the self they wished to present. This was shaped by the transitional nature of young adulthood. Smoking played a role in constructing time-out periods from the demands of everyday life in a similar way to alcohol use. The restrictions imposed by the smokefree legislation quickly became normal for most; however, the experience of smoking was influenced by the nature and quality of smoking spaces. The re-spatialisation of smoking necessitated by the smokefree legislation may reaffirm processes of social denormalisation and stigmatisation of smoking, whilst simultaneously allowing young adult smokers to produce, in some contexts, a positive, fun, sociable smoker identity.

The re-shaping of the life-world: male British Bangladeshi smokers and the English smoke-free legislation.

OBJECTIVE: To explore how male Bangladeshi smokers adapted to the English smoke-free legislation. DESIGN: We draw on data derived from the Evaluation of Smoke-free England (ESME), a qualitative, longitudinal study conducted between 2007 and 2008 in two English metropolitan areas. Repeat interviews (n = 34) were conducted before and after the legislation with 15 male Bangladeshi panel informants and from two focus groups: one with Bangladeshi men and the other with Bangladeshi women. RESULTS: Bangladeshi smokers who participated in this study had largely accommodated to the smoke-free legislation and most had reduced their consumption of cigarettes, albeit to a modest degree. However, at the same time some Bangladeshi smokers appeared to have increased their use of shisha, a popular alternative method of smoking tobacco in this community. Smoke-free legislation also had an impact on the social and cultural forces that shape smoking behaviour in this group. In particular, family homes continued to be a key space where tobacco is consumed, although the legislation may have helped to shift the balance in favour of forces that oppose smoking and against enduring cultural pro-smoking norms. Smoking in public was also less socially acceptable, especially in the vicinity of local mosques and at community events. In some older groups, however, smoking remains a deeply embedded social habit which can undermine smokers' efforts to quit. CONCLUSION: For maximum impact, tobacco control interventions aimed at whole populations may need to be supplemented by culturally sensitive measures in local areas where there is a high concentration of Bangladeshi people. Similar considerations may apply to other minority communities with a high prevalence of smoking.

The social context of change in tobacco consumption following the introduction of 'smokefree' England legislation: a qualitative, longitudinal study.

Legislation implemented in England on 1st July 2007 to prohibit smoking in enclosed public places aimed primarily to limit exposure to second-hand smoke, thereby reducing smoking-related morbidity and mortality. We conducted a qualitative study between April 2007 and December 2008 in six contrasting localities in two metropolitan areas in the north and south of England, which examined the impact of the legislation on individuals, families and communities. Using a multi-level longitudinal case study design, we collected data at community and individual levels, from three months prior to the legislation to a year after its enactment through a range of methods, including semi-structured interviews with panel informants and observations in locality settings. Drawing on theoretical understandings of the relationship between structure, agency and practice, this paper examines the social and cultural contexts of change in tobacco consumption. Observations in a variety of community settings identified reduced smoking in public places post-legislation. More than half of panel informants reported decreased consumption at one year post-legislation; a minority had quit, maintained or increased their smoking levels. The dominant pattern of reduced consumption was attributed primarily to constraints imposed by the legislation. This suggests that the law may have provided an impetus for some smokers to cut down or quit. Smoking behaviour was, however, strongly influenced by the social networks in which smokers were embedded, indicating that, while individuals had the power to act, any changes they made were largely shaped by social structural factors. Our findings support the need for a comprehensive tobacco control strategy that takes account of the complex array of contextual factors that constrain and enable smoking.

Archetypal trajectories of social, psychological, and spiritual wellbeing and distress in family care givers of patients with lung cancer: secondary analysis of serial qualitative interviews.

OBJECTIVE: To assess if family care givers of patients with lung cancer experience the patterns of social, psychological, and spiritual wellbeing and distress typical of the patient, from diagnosis to death. DESIGN: Secondary analysis of serial qualitative interviews carried out every three months for up to a year or to bereavement. SETTING: South east Scotland. PARTICIPANTS: 19 patients with lung cancer and their 19 family carers, totalling 88 interviews (42 with patients and 46 with carers). RESULTS: Carers followed clear patterns of social, psychological, and spiritual wellbeing and distress that mirrored the experiences of those for whom they were caring, with some carers also experiencing deterioration in physical health that impacted on their ability to care. Psychological and spiritual distress were particularly dynamic and commonly experienced. In addition to the "Why us?" response, witnessing suffering triggered personal reflections in carers on the meaning and purpose of life. Certain key time points in the illness tended to be particularly problematic for both carers and patients: at diagnosis, at home after initial treatment, at recurrence, and during the terminal stage. CONCLUSIONS: Family carers witness and share much of the illness experience of the dying patient. The multidimensional experience of distress suffered by patients with lung cancer was reflected in the suffering of their carers in the social, psychological, and spiritual domains, with psychological and spiritual distress being most pronounced. Carers may need to be supported throughout the period of illness not just in the terminal phase and during bereavement, as currently tends to be the case.